Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess gr...
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i am so confused!
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i am new to this, i am 30, and have had the same headache since november. it dies down for a bit but never just goes away. It is getting worse as the days go by. my forhead is also protruding, like a rectangle shape, i can fell the bone and you can see the shadows of the bone where it is raised. My peripheral vision comes and goes, and i also see traces of everything that i pass throughout the room. I have had several tests, everything is normal except for my gh and igf 1 and they are abnormally high. I went to an opthalmologist, he said my retina were intact and my optics nerves were ok, he then ordered and pituitary mri, which my gp had done as well. my mri came back normal but my levels are high and the headaches and forehead is just getting worse. my gp says not to worry but yet she is still ordering a suppressed igf 1 tests. i have scheduled an app. with an endo, could they have missed a tumor? could it be that i just got to it early? my hands are starting to cramp quite often, and i stuttering more and more and lose my train of thought. I just disenrolled from school today because i cant take the bright lights and just cant seem to grasp things anymore. it takes all i have to tie my shoes due to the nmbness of my fingertips. agin, this just comes and goes but it seems to come more and more often. I am 30, and experiencing growing pains like i did when i was 10. has anyone out here experienced anythng like i am experiencing? I would greatly appreciate anything anyone has to say!
Posted on 05/01/08, 10:05 pm |
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There are some of us that had to have multiple MRI's just because the resolution of the machines (I think) is different.- with and without contrast and etc. Couldn't there be tumors on your adrenal glands that would cause the GH & IGF-1 to be elevated ? The hormone levels being high can itself cause the headache.... my tumor was relatively small in comparison to some patients on this site but my hormone levels were still way off. Seeing an endo is a very smart next step, then find a good neuro. surgeon. Keep on those doctors don't let them make light of your symtoms, you are the best judge of how your body feels and it is trying to tell you something very important. 
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I have got to agree with sonnyjojo we dont have to have a tumour on the pit to have acromegaly.I have met someone who has no tumour and shows signs of acromegaly large hands headaches.But firstly you must be so worried and we will support you but you really need to talk to an encr but whilst you are waiting read some of our journals message any of us we will help any way we can dont feel you are alone JJx
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you are definately not alone have had all those problems.i still cant take bright lights i wear glasses that tint when the sun is out.and i hurt quite a bit.the appointment with endo is a good place to start because they can order all the tests that need to be done to find out where your problem is exactly . i know its very frustrating .and i wish you the best!!!!
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well, i went to an er yesterday at st. thomas in nashville, after all my tests came back, because of my high insulin levels, they are now talking insulinoma, which i guess is a sign of acromegaly, my doctors just wont say that word to me...acromegaly, its like they are scared. I am not scared, i need to know what it is, so i can learn what to do and how to keepit at a minimum. i am just lucky that i have a pushy mother who is a lab manager and ran all the tests that she felt needed to be ran, even when the doctor didnt order them, but now the doctor is glad she did cause it just rules out all the other things she said i may have(like ms).
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Hi Cornbredfed,
I'm not trying to scare you sweetie, but I had at least 5 MRI's before my tumor finally showed up. You have a lot of the symptoms I had. The headaches, sensitivity to light and the numbness in the fingers (mine was from the carpul Tunel syndrome) Keep going to doctors... get answers. Good luck! Mishxx
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Everything you described fits what I've experienced and it all finally led to a confirmed diagnosis of acromegaly. As some members already mentioned, it is not always a pituitary tumor that causes acromegaly and also, according to one site i stumbled across, pituitary tumors don't always act alone, so it is good that you will see an endocrinologist who can investigate all possibilities. Your mother seems like she has your best interests in mind and between the two of you, along with determination, you'll get the help you need. Too bad about your classes, but I think you can look forward to going back to them eventually when you get things evened out and settled down. Good luck. Rose
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I have had a huge problem with headaches, daily headache since 1/23/2007. I remember the date because my daughter took the SAT that day and it was the week I started Weight Watchers and the week we found out that my husband's employer was being bought by a Canandian company and he may lose his job. Anyway, my tumor was large and residual tumor is still large. After the surgery, my headaches have been worse but ibuprofen helps. I have been on injections to lower my IGF-1 but my headaches haven't gotten better. I did a 24-hr urine collection last week and go back to the endocrinologist on Friday. I'll let you know if he gives me any more insight into these nagging headaches. Fortunately, mine are not the migraine, nausea headaches but sometimes it is a severe, burning sensation in my head.
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I just noticed that you may be close to Nashville. I've got a friend with thyroid problems from East Tenn that goes to the endocrinologist at Vanderbilt. I think the endo is female but my friend thinks they're much better than the endo in Chattanooga.
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thanks everyone, my endo is a man from nashville, he is out of the frist center, he is supposed to be good, so i shall see!
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